Yogyakarta Pediatric Cancer Registry: An International Collaborative Project of University Gadjah Mada, University of Saskatchewan, and the Saskatchewan Cancer Agency

Introduction: In July 2001, a ‘twinning” project was undertaken between University Gadjah Mada, Indonesia,and the Saskatchewan Cancer Agency, Canada to create a computerised Pediatric Cancer Registry at SardjitoHospital, Yogyakarta city.
Objectives: To analyse information from the Yogyakarta Pediatric Cancer Registry(YPCR) in order to i) determine the prevalence of pediatric cancers in Yogyakarta Special Region and, ii)compare the demographics of pediatric malignancies in the Special Region (population: 3.3 million), with thoseof the Saskatchewan Cancer Registry in the province of Saskatchewan (population: 1 million). Methodology:In May 2001, a computer dedicated to the YPCR was installed at Sardjito Hospital. Bilingual (English/Indonesian)data capture forms were developed for data extraction from hospital health records. Data items were thenentered into a data base using the Statistical Package For Social Sciences (SPSS) program. Two projects wereinitiated: i) a prospective study from 2000-2009 of pediatric cancer cases from the YPCR, and ii) a comparisonof demographics from both Cancer Registries during the time period 1996-2003. Comparative data were obtainedfor age, sex, diagnoses, and referral patterns. Results were analysed using the SPSS software program.
Results:i) In the 10 year prospective study, 1,124 pediatric cancer cases were accrued in the Yogyakarta Registry, themajority being in the age group 0-5 years. Male:female::1.7:1. Leukemias were the most common diagnosis,followed by retinoblastoma and neuroblastoma. The majority of patients (68%) were referred from outside thecatchment area of Yogyakarta Special Region. ii) In the 8 year archival comparative analysis, the most strikingcontrasts were a higher proportion of children with retinoblastoma and negligible numbers of pediatric braintumors in the Yogyakarta Registry.
Conclusion: This is the first published report of a computerised pediatriccancer registry in Indonesia. The differences in diagnostic frequencies noted above may, in part, be due tocomparisons between the population-based Saskatchewan Cancer Registry versus the hospital-based YogyakartaPediatric Cancer Registry. The contrasts in demographics are multifactorial, and require further investigation.